iiinova — where your digital self keeps evolving

Stephanie Ko @sinistralscribe.bsky.social · 09/09/2026

Heads up, Vancouverites - you can now register to vote by mail in the @cityofvancouver.bsky.social election! The signup deadline is Oct 5 at 12pm if you want the voting package mailed to you (as opposed to picking it up at the Election Office). Learn more & sign up: vancouver.ca/your-governm...

vancouver.ca

Apply to vote by mail

All eligible voters may request to vote by mail.

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Stephanie Ko @sinistralscribe.bsky.social · 25/08/2026

I’ve already done the survey, and found it very interesting - they’re proposing a framework with five distinct types of post-exertional worsening, from short-term flares to permanent baseline reduction. Let them know what you think: docs.google.com/forms/d/e/1F... #MyalgicE #MillionsMissing #PEM

docs.google.com

CTN Lite Survey: Understanding Post-Exertional Symptom Worsening in ME/CFS

A Deep-Dive Patient Survey on Crashes, PEM, and What Meaningful Improvement Looks Like Post-exertional symptom worsening (PEM/PESE/PENE) and crashes were the top priority for treatment research ident...

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Stephanie Ko @sinistralscribe.bsky.social · 25/08/2026

Survey accessibility: Anonymous, uses Google Forms, approx. 20-30 min (depending on level of detail provided), some questions optional. Survey progress can be saved for later. Note that the survey touches on occasionally heavy subject matter (e.g., crash symptoms, long-term capacity reductions).

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Stephanie Ko @sinistralscribe.bsky.social · 24/08/2026

Want another way to support @donatemask.bsky.social? They’re having a back-to-school sale right now in their charity store - perfect for stocking up on masks & clean air supplies during all this wildfire smoke, and proceeds support their free N95 request program 😷 buymask.ca #N95sSaveLives #MaskUp

buymask.ca

EBSECan Charity Fundraising Store

Buy masks, elastomeric respirators, CO2 monitors, and air filters to protect yourself and your community. 100% of the money that we raise goes towards sending free N95/equivalent masks to people in ne...

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Stephanie Ko @sinistralscribe.bsky.social · 21/08/2026

If you’ve ever benefited from the great work of @donatemask.bsky.social - or if you want to ensure access to N95s for folks in need - donations are DOUBLED right now. $10 becomes $20 (& ships enough masks to protect a household); $50 becomes $100 (shipping thousands of masks to protect a community)!

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Opera Mariposa @operamariposa.bsky.social · 12/08/2026

Heads up, chronically ill theatre artists & arts workers in Canada! A new research project is asking about challenges & experiences in the theatre sector - and what access measures would help make the industry more accessible. Learn more & take the survey by Aug 31: nightswimming.ca/research/col...

Gradient green and teal graphic with white text reading, Survey of Chronically Ill Theatre Artists in Canada. In the corners are logos for Pure Research and nightswimming.

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It's ME(Jaime) @exceedhergrasp1.bsky.social · 08/08/2024

Today, Aug 8, is #SevereMEDay. Today we discuss severe-presenting #MECFS and remember people with severe ME. #MECFS is an infection-associated chronic illness, which means it is often, but not always, kicked off by an infection. ~Half of #LongCOVID cases at 6 mo meet the dx criteria for ME/CFS. 🧵

Two diagrams from the Mayo Clinic Proceedings article I co-authored. On the left, a diagram of a woman's body, including symptoms of fatigue, muscle aches, PEM, cognitive dysfunction, unrefreshing sleep, orthostatic intolerance, temp. dysregulation, urinary frequency, myalgia, sensory sensitivity/reactivity, swollen lymph nodes & other flu-like symptoms, shortness of breath, palpitations/chest pain, appetite changes and diarrhea/constipation. On the right, a wheel diagram of symptoms that may flare in post-exertional malaise, the pathology that occurs w/overexertion in which many symptoms flare and new symptoms may appear. It notes that PEM is not deconditioning, not being more tired than usual after activity, not second-day muscle soreness and symptoms are not necessarily relieved by sleep. It includes all the symptoms mentioned in the first diagram but has some sections on what it's like in the patient's own words.

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Opera Mariposa @operamariposa.bsky.social · 24/07/2026

Congrats to Mariposa Benefit + Awareness artist @liapas.bsky.social, who is starring in a new dance film featuring artists with #MECFS, #LongCovid, and other disabilities! Register for the free online premiere, coming July 29: www.eventbrite.com/e/unbound-gl...

eventbrite.com

Unbound: Global Premiere & Live Q&A

Join us online for the global premiere of Unbound followed by a live Q&A with the creators!

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Stephanie Ko @sinistralscribe.bsky.social · 20/05/2026

Funding opportunity ahoy for emerging BC-based BIPOC creatives from the disability+ community! Apply for one of five $1500 micro-grants to explore media art; no formal training or prior exhibition experience is needed. Learn more and apply by June 22, 2026: cinevolutionmedia.com/micro-grant/

cinevolutionmedia.com

Media Art Micro Grants – Cinevolution Media Arts Society

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Stephanie Ko @sinistralscribe.bsky.social · 13/05/2026

Awareness is vital, but it’s only the first step: it needs to lead to action and change 💙 Do you have other resources to share, or awareness initiatives for ME et al. that you want to amplify this month? Comment to let everyone know 👇 #MECFS #MyalgicE #MillionsMissing #May12 #ChronicIllness

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Stephanie Ko @sinistralscribe.bsky.social · 13/05/2026

5️⃣ Make spaces more inclusive for disabled & chronically ill people. There are so many ways to help – from digital options for homebound folks, to free & sliding-scale access for financial accessibility, to reducing risks of viral (& thus post-viral) illness with layered health & safety measures.

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Stephanie Ko @sinistralscribe.bsky.social · 13/05/2026

4️⃣ Provide direct, material support to chronically ill people in your community. This could look like offering help to friends, family, or neighbours, or it could mean contributing to or signal- boosting mutual aid. For the latter, find a few pre-vetted options at linktr.ee/stephaniekoc...

linktr.ee

Giving Back | Instagram | Linktree

Just a few of the causes I'm supporting right now. Please join me if you can!

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Stephanie Ko @sinistralscribe.bsky.social · 13/05/2026

3️⃣ Donate to support research, advocacy, physician education & more. FYI until June 1, gifts to @mefmsocietyofbc.bsky.social will be TRIPLED as part of @operamariposa.bsky.social's Benefit + Awareness Month campaign. For more info, visit Benefit.OperaMariposa.com. (You can also enter to win prizes!)

benefit.operamariposa.com

OPERA MARIPOSA - Benefit + Awareness

Join Opera Mariposa in support of the chronic illness community and the ME | FM Society of BC!

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Stephanie Ko @sinistralscribe.bsky.social · 13/05/2026

2️⃣ Amplify the voices of those impacted - whether by liking, following, or resharing social media posts; signing petitions; or participating in campaigns. Check out some of the orgs I mentioned in Point 1 for ways to join in!

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Stephanie Ko @sinistralscribe.bsky.social · 13/05/2026

1️⃣ Learn more about ME & other neuro-immune & post-viral illnesses. Follow orgs like @mefmsocietyofbc.bsky.social, @meactnet.bsky.social, @longcovidjustice.org, @batemanhornecenter.bsky.social, @openmedf.bsky.social & others; check out me-pedia.org; or watch the documentary ‘Unrest’ on YouTube.

me-pedia.org

Welcome to MEpedia

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Stephanie Ko @sinistralscribe.bsky.social · 13/05/2026

Today’s the International Awareness Day for #MECFS, #fibromyalgia, and other chronic neuro-immune diseases. After so many years, I’m not sure what else I can say to mark the occasion – so instead, I’m going to offer five things that allies can do to make a difference…

Stephanie sits in front of a white wall lit up with turquoise light, with green plant foliage out of focus behind her and blue hyacinths in front. She wears blue-rimmed glasses and an ocean blue top, and holds up a Go Blue For ME/CFS sign that reads, “I’m going blue for International ME/CFS Awareness Day because… the number of people with ME/CFS is growing day by day.” At the bottom of the sign is an illustrated blue ribbon surrounded by forget-me-not flowers, and the hashtags #GoBlueForMECFS and #GoBlueForACure.

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Opera Mariposa @operamariposa.bsky.social · 12/05/2026

Today is May 12th, the International Awareness Day for #MyalgicEncephalomyelitis (ME or #MECFS), #Fibromyalgia (FM), and other chronic neuro-immune diseases. 💙💜

A close-up, cropped photo of two white hands gently holding a blue and purple awareness ribbon from opposite ends. The person is wearing a cream-coloured sweater, and only their torso is visible. At the bottom of the image, two logos are placed: one for Opera Mariposa, which includes a red butterfly; and one for the ME | FM Society of BC, which includes a blue, purple, and teal butterfly.

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Opera Mariposa @operamariposa.bsky.social · 01/05/2026

It’s finally May! 🌷 Our 2026 Benefit + Awareness Month is now LIVE, honouring the International Awareness Month for #MyalgicEncephalomyelitis and #Fibromyalgia (ME & FM). Join us at Benefit.OperaMariposa.com in support of the #ChronicIllness community and @mefmsocietyofbc.bsky.social:

Graphic with a purple and blue butterfly resting on a purple flower, amidst a misty blue background and green field. Purple text reads, 'Opera Mariposa's Benefit + Awareness Month for the ME | FM Society of BC, May 1 - June 1, 2026.' A purple moon-shaped medallion features additional text: 'Triple your donation. Art, prizes, online tea party for ME/CFS, Long Covid, fibromyalgia. Donations tripled in support of the chronic illness community.' At the bottom of the graphic, a teal bar features the URL Benefit.OperaMariposa.com and icon images showing online access, English closed captioning, self-paced activities, with participation by donation and free. Tiny text adds, Support up to $3,000 will be triple-matched!

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Stephanie Ko @sinistralscribe.bsky.social · 23/04/2026

To learn more about this issue, you can read this open letter from the Canadian Immunocompromised Advocacy Network: immunocompromised.ca/accelerated-... I hope you'll join me in getting stabbed for science - and in raising your voice to ensure more people have access to that same protection!

immunocompromised.ca

Expanded COVID-19 Education and Vaccine Choices for all Canadians - Canadian Immunocompromised Advocacy Network (C.I.A.N)

CIAN submitted a letter advocating for expanded COVID-19 education and vaccine choices for all Canadians. Many Canadians still face challenges accessing vaccines that meet individual needs and prefere...

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Stephanie Ko @sinistralscribe.bsky.social · 23/04/2026

People are already calling on gov to order Novavax for the fall season, to ensure better vaccine access and choice. Join in by emailing your province/territory's health ministers: stillcoviding.ca/en/take-acti... Or find a BC-specific campaign here: donoharmbc.ca/bc-demands-n... #NovavaxNow

stillcoviding.ca

Novavax now! We need access to the Novavax COVID-19 vaccine in 2026/2027!

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Stephanie Ko @sinistralscribe.bsky.social · 23/04/2026

Note: while BC's available COVID vaccines are safe and effective for many people, there are also some folks who can only tolerate a protein-based vaccine option like Novavax. BC doesn't currently offer this vaccine option, but it may be available in Canada this fall: covidsociety.ca/news/nuvaxov...

covidsociety.ca

Sanofi Making Nuvaxovid (Novavax) Available in Canada this Fall - Canadian Covid Society

The Nuvaxovid vaccine — more commonly known as Novavax — will be made available in Canada for the 2026-2027 season, Sanofi announced this week in a press release. Nuvaxovid is the non-mRNA protein-ba...

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Stephanie Ko @sinistralscribe.bsky.social · 23/04/2026

Reminder that COVID vaccine protection wanes over time and new variants are always evolving, so it's important to stay up-to-date. There's also evidence that vaccination can reduce (though not eliminate) risks of developing #LongCovid: science.gc.ca/site/science...

science.gc.ca

Dealing with the fallout: Post-COVID Condition and its continued impact on individuals and society

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Stephanie Ko @sinistralscribe.bsky.social · 23/04/2026

I just booked my family's spring COVID vaccinations by calling the BC vaccine line at 1-833-838-2323. It seems like anyone can call - I didn't have to prove high-risk health status or anything like that. Phones are staffed Mon-Fri, 8 am-6 pm; translators are available. #Covid19BC #GetVaccinated

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Stephanie Ko @sinistralscribe.bsky.social · 13/04/2026

Heads up: for a limited time, North Delta-based artist Enkay is offering FREE 3D-printed accessibility devices to folks in the Lower Mainland: docs.google.com/forms/d/e/1F... There’s everything from pencil & utensil holders, to blister pack & bottle openers, to a Braille slate & stylus, & much more!

docs.google.com

3-D Printed Accessibility Devices Request Form

Hello, These devices are available for free for a limited time via the generous funding of the Neil Squire Society. My name is Enkay, and I will be in contact with you via email or via Cole when devic...

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Stephanie Ko @sinistralscribe.bsky.social · 06/03/2026

Opera, sword-fighting, celebrating a queer history icon, and accessible digital & in-person attendance options: what more could you ask for? I already have my ticket to the digital premiere of OperaQ’s #LaMaupinFilm. Learn more & get your own pay-what-you-can tickets at www.operaqto.com/la-maupin

operaqto.com

La Maupin: A Musical Film | Experience Her Story — Get Your Tickets Now! — OperaQ

Discover the life and legacy of Julie d'Aubigny in this musical film. Explore her scandalous stories and historical context through a team of queer and non-binary artists. Ideal for opera and history ...

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Stephanie Ko @sinistralscribe.bsky.social · 03/03/2026

Do you have thoughts about safety in BC's arts & entertainment sector (motion picture, performing arts, live events)? Weigh in via Actsafe’s 15 min survey til March 8, 2026: www.surveymonkey.com/r/72DZFGL Many questions optional, anonymous (or leave an email to enter to win $100 gift cards).

surveymonkey.com

2026 Actsafe Arts & Entertainment Safety & Training Survey

Take this survey powered by surveymonkey.com. Create your own surveys for free.

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Stephanie Ko @sinistralscribe.bsky.social · 29/01/2026

(P.S. If you're a musical artist from a systemically-excluded group, Creative BC's Demo Recording funding program has just opened its intake as well: creativebc.com/funding-prog...)

creativebc.com

Demo Recording - Creative BC

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Stephanie Ko @sinistralscribe.bsky.social · 29/01/2026

I had the pleasure of consulting on the first iteration of this program, & I'm thrilled to see it return. Individuals, businesses, AND non-profits can apply. And funds can be used for rent, salaries, production costs, marketing, training, health & safety measures, accessibility improvements & more.

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Stephanie Ko @sinistralscribe.bsky.social · 29/01/2026

Funding opportunity ahoy! Creative BC's Business Foundations program is offering up to $10k for music businesses run by systemically-excluded groups (including BIPOC, 2SLGBTQIA+, Deaf and Disability+ community members). The application deadline is March 25th at 4pm: creativebc.com/funding-prog...

creativebc.com

Business Foundations - Creative BC

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Stephanie Ko @sinistralscribe.bsky.social · 13/01/2026

And a few side notes from me: - Regarding expiry - testing has shown N95 masks can be effective over a decade past their official expiry date: jamanetwork.com/journals/jam... - The 3M 1860 is a healthcare-grade mask. Their standard size fits like a biggish medium or a smallish large - see chart.

Mask size chart from Canada Strong showing a range of mask sizes from child, teen/small, medium, large, and extra large. The standard sized 3M 1860 mask covers the medium category overlapping slightly into large. It is just a little bigger than the Vitacore CAN95e, Vitacore CAN95, Layfield 95PFE – L3, Breatheteq CA-N95 medium earloop, an Q100 medium. It is just a little smaller than the 3M 9105 and 1804, Dräger 1950 medium large, and Dräger 1750.

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Stephanie Ko @sinistralscribe.bsky.social · 13/01/2026

- Pickup at Richmond, BC warehouse, or shipping is possible (must cover costs) - 20 masks per box, 6 boxes per case, each case 17x8x11” (6 lb) - Request by emailing BOTH ali@recoveraidmd.com & roshawn@recoveraidmd.com. Give no. of masks wanted, postal code for shipping OR pickup time availability

Lime green graphic with similar wording to the Bluesky post

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Stephanie Ko @sinistralscribe.bsky.social · 13/01/2026

Signal-boosting from Masks 4 East Van on Insta: FREE bulk N95 masks to YVR community members & groups - RecoverAidMD has 5 pallets of 3M 1860 (standard size) to donate - Expiry Sept 2025 & some other later expiries - Time sensitive! Will go to landfill if not claimed by Fri Jan 23 - Not for resale

Lime green graphic promoting free N95 masks to community members and groups, with a photo of a pallet of boxes as well as a product photo of a real blue 3M 1860 respirator in front of a small box of respirators. Text echoes the wording in the Bluesky post

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Stephanie Ko @sinistralscribe.bsky.social · 22/12/2025

You know the phrase, "look for the helpers"? I try to do that - and it turns out, there are a lot of you out there. So thank you for your kindness and care, on behalf of me and my family 💕

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Stephanie Ko @sinistralscribe.bsky.social · 22/12/2025

- edited my eulogy script - captioned my eulogy video - designed "please wear a mask" signage for the funeral venue - provided tech support for the memorial livestream - picked up the slack on projects I've had to slow down on - offered support & kind words, even if you didn't know GG personally.

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Stephanie Ko @sinistralscribe.bsky.social · 22/12/2025

- provided technical advice on improving indoor air quality for both the hospital & funeral venue; - loaned us portable power stations to run air cleaners without wall power - sent food delivery gift cards (& roped others into doing so) while we survived on takeout after long days at the hospital...

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Stephanie Ko @sinistralscribe.bsky.social · 22/12/2025

I'd also like to thank everyone who's supported me and my family over the last few months, including (but certainly not limited to) the folks who: - provided insights on navigating the medical system & end-of-life care - sent cute animal pics, videos, & music recs to brighten Gung Gung's days...

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Stephanie Ko @sinistralscribe.bsky.social · 22/12/2025

Update: my grandfather's memorial service recording is now online, at youtu.be/nP7Gbbi6TkQ. Timestamps and access notes can be found in the video description - and instead of writing a very long thread about him here, I'll just note that my own eulogy for him starts at 1:08:23.

youtu.be

Gum Chu Cheong memorial service

YouTube video by Stephanie Ko

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Stephanie Ko @sinistralscribe.bsky.social · 19/12/2025

Vancouver Coastal Health (@vchhealthcare.bsky.social) is establishing an accessibility committee, and the application deadline is tomorrow (Dec 19). It involves 4 virtual meetings a year for 2 years; honoraria are available under some circumstances. Learn more & apply: engage.vch.ca/do-you-want-...

engage.vch.ca

Do you want to help make VCH more accessible?

Overhead shot of six disabled people of color at a rooftop deck party. An Indigenous Two-Spirit person with a prosthetic leg smiles directly at the camera and gives a thumbs up while everyone else is ...

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Stephanie Ko @sinistralscribe.bsky.social · 13/12/2025

Did you know? At @donatemask.bsky.social: - $20 ships enough masks to protect a household - $100 ships thousands of masks for a mask bloc (mutual aid group) to distribute locally - with donation-matching til Dec 14, just $10 or $50 is enough to make it happen! donatemask.ca/fundraiser

donatemask.ca

Double your donation during Donate A Mask's Giving Tuesday fundraiser!

This Giving Tuesday, every donation will be matched—so your kindness goes twice as far. Help us send masks to people who need them!

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Stephanie Ko @sinistralscribe.bsky.social · 09/12/2025

In lieu of flowers, donations can be made to charity, such as the VGH Hospital Foundation or the Heart & Stroke Foundation. Learn more about Chu or sign the digital guest book: www.kearneyfs.com/obituaries/g...

kearneyfs.com

Gum Chu Cheong Obituary November 29, 2025 - Kearney Funeral Services

View Gum Chu Cheong's obituary, find service dates, and sign the guestbook.

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Stephanie Ko @sinistralscribe.bsky.social · 09/12/2025

For those planning to attend in-person, air cleaners & N95 masks will be provided. We ask that folks wear masks if able to do so, to protect Gung Gung’s immunocompromised loved ones & so we don’t get anyone sick right before the holidays. If you feel unwell, please join via livestream instead.

Chu Cheong sits on a bus, wearing a black N95-style mask (CanadaMasQ size medium, for those who are curious). He also wears glasses, a grey sweater-vest and white shirt, and a light beige windbreaker with a red Canadian flag pin.

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Stephanie Ko @sinistralscribe.bsky.social · 09/12/2025

More thoughts to come, but for those who wish to pay their respects, the memorial service will be livestreamed Fri Dec 12 at 11am PST / 2pm EST. Closed captions & realtime transcript access enabled; the event will be recorded for asynchronous access. Register here: us02web.zoom.us/meeting/regi...

us02web.zoom.us

Welcome! You are invited to join a meeting: Gum Chu Cheong memorial livestream. After registering, you will receive a confirmation email about joining the meeting.

Join us to celebrate the life of Gum Chu Cheong (1930-2025), with a service streaming from St. John the Apostle Parish in Vancouver, Canada. The service takes place starting at 11 am Pacific Time / 2 ...

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Stephanie Ko @sinistralscribe.bsky.social · 09/12/2025

[CW: Loss] My grandfather (“Gung Gung”), Gum Chu Cheong, passed away on Nov 28 at the age of 95. Many of you knew him through his tireless volunteer work w/ @operamariposa.bsky.social (& his church, his strata council, the Chinese Cultural Centre, Chinese Garden Society, Dragon Boat Association…)

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Opera Mariposa @operamariposa.bsky.social · 03/12/2025

Happy International #DisabilityDay! Today we're celebrating the wonderful disabled creatives we've been blessed to work with at Opera Mariposa - and encourage you to check out our roundup of resources about accessibility in the performing arts at operamariposa.com/resources/! #IDPD

operamariposa.com

Resources

Discover some of our top resources for accessibility in opera and the performing arts - plus the new archival home of 'Opera and Disability'.

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Stephanie Ko @sinistralscribe.bsky.social · 11/11/2025

References: Proposed 2026 budget: council.vancouver.ca/20251112/doc... Appendices A & B, budget allocations: council.vancouver.ca/20251112/doc... Appendix C, resident survey results: council.vancouver.ca/20251112/doc... (Note the preferences of residents, versus the Council decision.)

A screencap of survey results shows that 52% of residents support a property tax increase of 5% to maintain current level of services; 16% of residents support a property tax increase of 2.5% with some reductions and services; 12% of residents support a property tax increase of 1.5% with moderate reductions and services; and 10% of residents support of property tax increase of 0% with the most reductions in services. Red text indicates the option chosen by Council, pointing to the least popular option of a 0% property tax increase with the most reduction in services.

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Stephanie Ko @sinistralscribe.bsky.social · 11/11/2025

You can also register online to speak at the City Council meeting briefly via phone about the 2026 Capital and Operating Budget: vancouver.ca/your-governm... The meeting is this Wednesday, November 12th at 9:30 am; you must register by Tuesday, November 11th at 5 pm. #VanPoli

vancouver.ca

Request to speak at a Council meeting

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Stephanie Ko @sinistralscribe.bsky.social · 11/11/2025

Heads up, Vancouverites - the City’s proposed 2026 budget includes major cuts to arts, community services, sustainability & more. 👉 Send email re: climate - stand.earth/vanbudgetcuts 👉 Email template re: arts - bit.ly/GVPTAcitybud... 👉 Send comment to City Council - vancouver.ca/your-governm...

climatestand.earth

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Stephanie Ko @sinistralscribe.bsky.social · 21/09/2025

Help needed for "e", a local organizer I know. After developing #LongCovid, e also lost housing & possessions when an oil refinery covered them w/ toxic fumes. They've finally secured new housing, but need help w/ rent & medical costs while long-term supports are pending. chuffed.org/project/supp...

graphic of clouds and sky, with a pink box containing the text, Support disabled QTPOC rebuilding after medical & housing crisis. chuffed.org/project/supportfore

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